Well, I'll tell the Developmental Pediatricians and the Child Psychiatrists just to pack up and quit, huh?
Not all of "medicine" is pharmaceuticals.
I never said it was and I apologize if it seemed I implied that. Behavioral therapy certainly helps, but given how many children do not improve enough to function in society I think it is fair to say that current medicine does not offer much of substance to autistic children
We trash them because we're too complacent as a field against fighting back against those who trash us. If a patient thinks I'm an idiot and I don't know what I'm doing and are going to do X, Y, and Z, that's cool, I'm not going to trash them. When they start their crap about how we all get rich from vaccines and we know that they cause autism but we cover it up, and that there are real cures out there we don't want them to know about etc. etc. etc....then it becomes not only our right to fight back, but our DUTY to help stop the spread of misinformation.
I certainly agree with you with fighting back about the vaccine issue. But lumping anti-gluten diets and other alternative therapy into the vaccine issue and calling all of it together nonsense is just a much misinformation as what McCarthy is espousing
Then the onus on them is to prove that these things work. By your logic, why can't Merck/Pfizer say "Well, we don't have any RCT to prove that this anti-hypertensive works, but you know, there's so many causes of hypertension those studies may not show the benefit even if it exists...so why not take it? My cousin Bill took it and now he's got 120/70 blood pressure!"
Why does CAM get this pass to do whatever it wants? People make money off CAM just like conventional treatments, and they have side effects just like traditional treatments, why the free pass.
Certainly true. But let me ask you this. You are a pediatrician, and a parent comes to you with a child recently diagnosed with autism and who has started behavioral therapy. He/she is seeking solutions. What are you going to tell them?
I would certainly tell them to have the child continue to receive all vaccines. However, I would also present alternative therapies, while cautioning that they are not proven medically or scientifically, by saying that "there are reports that some children may benefit from so-and-so". These parents are desperate and rather than completely shooting down alternative therapies and saying "this is all we can do, it is an incurable entity" (believe it or not, I have this firsthand and from interacting with parents of autistic children is not uncommon).
What happens if you act so close-minded? A) Parents start reaching for anything, both more benign alternative therapies and dangerous or useless/expensive ones without consulting their doctor because they don't like nor trust the medical profession and b) some parents react by (unfairly) blaming doctors for their predicament.
I think all doctors could be better-served by being more open-minded. It would do a lot to keep parents from being "crazy" and believing "misinformation".
We are open minded. If Jenny McCarthy and her anti-intellectualites addressed me as a scientist or a physician...no scratch that, just addressed me on any level other than their "My emotions trrump your thoughts" approach, I'd be willing to see what they have to say.
But they are going to be emotional, and much of the anger springs from physicians talking down to patients or requiring that their layperson patient address them "as a scientist or a physician".
They don't need a double blind RCT to show me that their no gliadin diets or candida extermination works, that's a high standard we don't hold our selves to. But give me something other than "It worked for me, that's all I need *rasberry*. She's making money off this book and being a spokeperson, publish a case series, a cohort study, a cross sectional study. These aren't insanely expensive and a study free of flaws would be published in every major journal, I GUARANTEE IT. But they have no interest in that.
I agree with you for the most part here. Luckily NIH just sponsored a huge national study following women from pre-pregnancy to when their kids are 21 and autism will be closely examined. Maybe we will get that coveted evidence.
On a related note, I want to share something about these "recovered" kids. Discounting, the misdiagnosed kids who do get better, consider this. Kids with autism may, in fact, do better on their special diets and heavy regime of treatments. But it may have nothing to do with the treatments and everything to do with doing SOMETHING. A developmental pediatrician I worked with suggests to parents that a heavily regimented/scheduled lifestyle helps an autism kid feel comfortable nad prevents them from being overwhelmed and shutting down.
So, what happens when these moms switch to these special diets? They go from McDonals and Pizza Hut when their kids are screaming to preparing meals for their kids at set times in a day. They give them their medications for detoxicification or fixing systemic candidiasis at the same times. The controlled framework they've created may be the thing helping these these kids, not the no gliadin food or chelators.
Perhaps. I would not completely discount it.
Also central to the discussion at this point is that we're not saying that such things as gluten free diets never help. We are saying that there is no physiologic basis for them to work so they are equivalent to homeopathy and that they are not without a cost. The difficulty and unpleasentness of such an intervention with no proven benefit faces an uphill battle if you try to argue that benefit>cost.
It is difficult but far less so than it was even 5-10 years ago. The availability of tasty gluten-free food is astonishing now. The cost is the real issue, but perhaps if future evidence demonstrates a scientifically supported indication for the special diet insurance will help....
As doctors we are not limited to commenting and advising on disease process that we have experienced in our families and ourselves. I've never had meningitis but I will not be told I can not pass medical judgement on the appropriateness of treating it with, for example, prayer, instead of antibiotics.
Extreme example because in that case we have an intervention which we have shown to be of the utmost benefit. Whereas in the case of autism there really is not much.
I don't think that open-mindedness is necessarily a better trait for doctors than is scientific skepticism. In fact I think we have been a little to open-minded in recent years (Vioxx, Nestiritide, Propulsid, etc.). Perhaps in these particular situations it's better that medicine admit when there is little it can do and allow the peripheral "healers" to dabble in accordance with the patient's wishes. If any of this stuff gets to the point that it passes scientific rigor then it will be embraced.
I am not asking for doctors to prescribe them to their patients. Just present their existence. Listen to your patients if they are interested, do not scoff or sneer at them. You may believe that doctors are too open-minded, but I personally disagree on that point.
Of course, you are right about the evidence-based medicine idea. However, we should be able to admit that a fair amount of what is considered standard practice is not necessarily solidly evidence based. I recently read an interesting book which looked at this (along with some other things): "Hippocrates Shadow" by David Newman, MD. I think it's a very worthwhile read especially for med students or even pre-meds, as it reminds us of the importance of patient communication, the power of the placebo effect in many instances, the fact that we don't have all the answers (which we sometimes forget), the slowness of medicine to change even in the face of evidence, etc.
We rarely have all the answers and the answers we have often turn out to be completely wrong. Medical treatment changes so often that in 20 years the things we swallow from lecturers, spit out on tests, and treat as gospel will most likely be wrong/obsolete.
And I agree about the danger of forgoing solid treatments to solely pursue something with poor evidence behind it. However, an integrative approach can allow for safer trials of these "alternative" treatments. This does, however, require a little open-mindedness on the part of the physician. A total and complete lack of any open-mindedness, as seen in a few posts here, is what conjures some concern. And I'm not talking about avoiding vaccines.
I am glad someone else observed the lack of tolerance exhibited in this thread
I do like PeepShow's notion of allowing families/patients to feel as though they are doing SOMETHING...some locus of control. I believe that can be quite helpful in many cases.
Agreed
Interesting idea. That's one of the arguements psychiatrists make for the relatively small benefit seen for antidepressants vs placebo in clinical trials for depression.
And yet so many people benefit from antidepressants.
The more I see that more I believe that it is the case. I am not sure what field I am entering at this point in my education, but I am strongly interested in studying autism with a focus on possible GI causes of the spectrum in some children.
When you say 'symptoms related to it', do you mean solely GI complaints? An emerging concept is that of non-celiac gluten sensitivity, whereby a patient may not show positive labs for classic celiac disease but yet has sensitivity to gluten. Non-GI symptoms can include neurological symptoms and perhaps a greater risk for autoimmune disorders. Has all the science been worked out on this yet? No. But it's ongoing and I think we'll see more of this in the future as more is learned and understood.
This is the research that really interests me
Families of autistic kids may have ended up putting their kids on a gluten-free diet out of desperation initially, but then found that the kids really did make improvements. Sure, these are anecdotal cases, but does that mean these people have to be wrong/crazy/anti-medical/conspiracy theorists/etc.? The diet is tough (I don't know about Draconian, but tough), but can be done safely. And there are quite a few companies now that are making 'everyday' foods in gluten-free varieties due to demand, which makes things a little easier for those pursuing the gluten-free lifestyle.
What he said
